Posts tagged ‘coping with rare disease’

As life would have it, after a few failed attempts to connect during a very busy fall, we finally had the pleasure to meet with member Kenny Krips in Philadelphia this past October. Over the summer, Kenny had contacted the FIRST office to check in, say hello, and inform us of one important detail, “It was time to tell his story.”

We think it’s important to share it!

Kenny was born in a small southern New Jersey town, Glendora, in 1970, a time period when very little was known about his skin condition (ARCI-lamellar type ichthyosis), and even less known about its treatment. His childhood, once depicted in a documentary entitled “Kenny”, was admittedly not ideal, as he not only was singled out for his skin condition, but was also the child of divorce at a very early age.

However, to his good fortune, Kenny was surrounded by the love of a supportive older brother, and a mother to whom he gives a world of credit for his upbringing. “Raising a child with a rare condition that no one has ever heard of, virtually on her own, my mom never once let on that she was anything less than strong and confident,” he said. And, she taught him one of the most valuable lessons of all: Do not pity yourself. Respect yourself, and always present well.

And present well he does. Although Kenny admitted over the years he has experienced dark periods of frustration and low self-esteem, he now feels his life experience, including his ichthyosis, has brought him to a place of acceptance, with a good dose of wisdom. He is a friendly, well-spoken gentleman, with a new perspective on life, and an enviable passion for his work.

“In a way, I am blessed to be around trauma,” Kenny proclaimed.

Although Kenny’s degree is in interior design, he feels compelled to help people on a deeper level. As the business supply coordinator for the trauma unit at Cooper University Hospital, he has ample opportunity to connect with people in a very deep and meaningful way.

“This woman came into the trauma unit because she had been in a car accident. She had Alzheimer’s and was very confused and agitated. I sat next to her and just rubbed her foot. She did not ask what happened to me (lifting his hands up to show that they are very affected), she just sat, looked me in the eyes, and listened. And then she started to calm down. She seemed to really be affected by what I was saying,” he said, further explaining why his job is so fulfilling. “The other day a man in the trauma unit stopped me and said, ‘thank you so very much.’ For what?, I asked. ‘You asked me if I was ok and let me know you were here to help me and that made all the difference.’ It really made me feel good.”

Kenny credits his job as being a major influence for his newly found perspective. “There are so many parts of my job that make me feel good about being alive. And as my mom always said, “If you help one person in 44 years, you did your job.”

He has also come to terms with the notion that “everyone suffers” in one way or another. “I do still get frustrated, sometimes. Like when I want to wear black or be outside on hot day. But everyone struggles with something once in a while…finances, career, health issues. Everyone faces the fear of the unknown,” he said as he explained that this realization has left very little room to feel sorry for himself. “I am lucky that I have a strong family unit, a job I love, and amazing friends.”

With regard to how he now handles adverse reactions to his condition, Kenny adds, “I would rather have people acknowledge the “difference,” then just stare or ignore. But if they do stare, or make a face, I just have to pardon them. Life is too good to worry about it.”

When asked how his life would change if he suddenly did not have ichthyosis, Kenny joked, “Well, I’d never be out of a speedo!” But then he added, “I am absolutely okay with who I am. I am not mad at who I am anymore, no longer stuck. I feel good about what I do and I want to continue to do that. I don’t want to stop. I think the man upstairs has it all mapped out for me. Whatever time I do have here, I want to make the best of it…ichthyosis or no ichthyosis.”

At some point in their journey with ichthyosis, individuals and parents with affected children will need assistance, both physically and emotionally, from someone other than their medical practitioner. In difficult times, a reprieve from the day-to-day, a shoulder to lean on, or simply a trustworthy listener, can truly be a life-saver. More often than not, this type of support comes from extended family. And although it can be stressful, turning to family in these types of situations may not only be therapeutic, but can create unbreakable bonds for parents, grandparents, and siblings.

Perhaps you are the grandparent, aunt, uncle, or sibling of an individual affected with ichthyosis, and are contemplating whether or not to attend the upcoming FIRST National Family Conference? Over the years we have met countless individuals who were contemplating this very same decision, many of whom ultimately decided it was best to attend the conference, not knowing really what to expect, or if they would gain any benefit at all.

Mary and David Cina, grandparents of Myles and Portia Cina, affected with ichthyosis en confetti said, “We attended and will continue to attend FIRST conferences to support our son, daughter-in-law, and grandchildren. We have learned a lot and enjoyed meeting other families, learning their challenges, and how they have dealt with them. The doctors provide a wealth of knowledge and are very approachable, willing to help and teach all attendees.” (The Cina Family pictured left)

Chrissy See, a sibling of member Rachel See, also affected with en confetti ichthyosis, is not only attending the conference in Indiana this year, but has played a pivotal role in helping to gather items for the conference fundraising raffle. “My family has always been a huge inspiration, and recently my friends, respected colleagues, and even “strangers” have become my new source of inspiration for my involvement with FIRST. In fact sharing on our company community webpage to 200 work friends created generous donations and support. I am looking forward to attending the FIRST National Conference because it will also be a special opportunity for me to learn and grow from others. Awareness is the first step to curing ichthyosis and I am inspired by others to take that next step for my family.” (Chrissy See pictured right).

And Kellie Wilson, sister of Shannon Hamill, and aunt of Lauren Hamill affected with harlequin ichthyosis, has been by her family’s side since day one. “ My niece Lauren was born with harlequin ichthyosis. Two words no one in my family had ever heard before. Now the word ichthyosis has become familiar to me and my family and it is not as scary anymore, thanks to the FIRST Family Conferences. It was comforting knowing that they were not alone and that there was a whole community out there for them to learn from and to share their stories with. The first time in Chicago I was there as more of a supportive role. I wanted my sister and her husband to attend as many discussions as possible without having to worry about Lauren. However, this will be my third conference and I am looking forward to seeing everyone again. ”

Although there are numerous opportunities for networking and education at the family conference, in the end, it seems that sometimes simply “being there” for a family member may just be the most meaningful kind of support you can give. (Kellie Wilson, Shannon Hamill, Kelly Klafter pictured left).

“How Rude, Can You Believe They Said That?”- This breakout session at The National Family Conference will offer all the tips and tactics you’ll need for dealing with unwanted stares, comments, or flat out rude behavior. The session will be led by Eric Scott, a pediatric psychologist from the Riley Child and Adolescent Psychiatry Clinic at Indiana University. Eric has extensive experience working with individuals and their families in adjusting to and coping with chronic medical illness. His work frequently encompasses repairing the effects of bullying and teasing that those with chronic illness face. The session will cover specific ways to respond to instigators; how to emotionally cope with being teased and how to build resiliency in the face of distress and adversity.

Why Talk About Rudeness?

Over the years countless members have expressed feelings of frustration and isolation, brought about by the emotional roller coaster of dealing with rude comments, bullying, and offensive behavior. And although it is natural to take a defensive posture, and for upsetting emotions to arise, there are also many productive steps that can be taken toward a peaceful resolution. Some of the most widely used practices include:

Educate Them – Sometimes explaining you or your child’s skin condition is the best way to handle all the questions, stares, and negativity. FIRST can provide you with convenient awareness cards briefly explaining the genetic condition of ichthyosis and that it is not contagious. These cards can be very useful for public activities, such as dining out or traveling. You can also distribute to someone who has made an offensive or rude comment or simply give to friends, family, or your community.

Build Your Inner Confidence – Participating in activities that make you, or your child, feel confident and accepted will build resilience toward rudeness. Turning to games, physical activities, hobbies, personal interests – anything you enjoy – is not only enjoyable but can support an emotionally strong outlook in tough situations. Knowing that you have unique skills, strengths, and interests, and sharing those interests with others, will ensure that you are perceived as the multi-dimensional person that you are, and not solely defined by your skin disorder. There will always be people who try and put others down. Self–esteem is the best defense.

Patience is Key – As difficult as it may be to accept, sometimes people are just afraid of the unknown. It may take a little while for the whole community to become informed of the disorder, and the special circumstances it may present. Once they have a chance to get to know you or your child – beneath the surface – you will feel more and more comfortable just being yourself, and less concerned with what others may do or say.

We’ll take an even deeper look at this issue during the conference, and provide ample opportunity for members to ask questions, make suggestions, share stories, and walk away well-equipped for dealing with rude behavior. You will also find our newly expandedBullying and Rude Behavior Resource Sheet on our website, chock full of ways for you or your child to resolve the uncomfortable situation of “dealing with rude behavior,” as well as suggested reading and links to related resources.

We are delighted to share a guest post from FIRST member, blogger, portrait photographer and author, Courtney Westlake.

Courtney, as many of you know, is the mother of four-year-old Connor, and two-year-old, Brenna Westlake, who is affected with Harlequin ichthyosis. Her blog, Blessed by Brenna, invites readers into the Westlake’s lives and home, taking them along on a weekly journey of medical challenges, extraordinary courage, and the most unexpected life lessons of all. Her posts are a unique blend of topics including personal insight, clinical explanations of ichthyosis, and heartwarming updates on Brenna’s amazing progress. It is not only a cultural commentary on living with a rare genetic skin disorder but an authentic, inspirational and truly unforgettable journey of love, hope and family. Her blog this week expresses a moment of transformation and the deep realization of “accepting the life you were meant to live.”

My survival mode and the loss of the life I had planned

by Courtney Westlake

We are now entering the third year of Brenna’s life, and it seems very surreal to me. Every memory of the years since she arrived are some of my most vivid but yet almost part of a blur too – a blur of emotions, adjustments and just trying to find my way. And relying heavily on God and others.

Even though I’ve been a huge fan of Crystal from Money Saving Mom for a long time, I think I was most looking forward to reading her newly released book because I could relate so much. When I first saw the title, Say Goodbye to Survival Mode, I knew I would be able to both relate to the book and take away so much from it.

Because I was in the trenches of survival mode for a long time. The kind of survival living where life continues around you at lightning speed, but all that you are focused on is whether your child will live. The first year of Brenna’s life, I often felt like I was being smothered. Smothered in grief, frustration, stress. I did my absolute best to focus on the positive.

I said no and stepped away from just about everything I had been involved with. I cut my photography studio work way, way back – after having just completed a beautiful renovation to my studio space the year before. I stepped away from volunteer roles with community organizations. I quit most of my freelance writing jobs.

And instead, I lived one day at a time that year, maybe one week at a time during the better times.

In 2012, there was a NICU stay, eye surgery, 4 additional hospitalizations, surgery for g-tube placement, and multiple skin infections. That was what consumed me that year, and I don’t remember much else. I was surviving, and that was the only option at the time.

I forced myself to get dressed in the morning, to try to find a schedule, to become educated on Brenna’s skin care, to continue to do activities and read with Connor as usual. I forced myself to concentrate on the good instead of the bad. Many times, I forced myself to smile.

(And I accepted help. Because I knew that I needed it. I relied so heavily on everyone in my life for help. Lots of help. We have had so much help I can’t even name it all. And I know without that help, I would likely still be in survival mode. And I just want to take this time to say thank you to all of you for all you did for us during that time. I remember every single act of kindness, every card, every message, every gift card and meal. And I still think about your incredible generosity and thoughtfulness all the time.)

And I would say with complete certainty that every morning I got dressed, every time I focused on what we could do instead of what we couldn’t do, every time I made myself smile instead of cry, it was worth it.

Because eventually time wore on…and we began to adjust. To life with two children, to life caring for a rare disease. And I realized that I had the chance to take this opportunity to rise up from living in the day-to-day to living both in the present and for the future. I realized that even though you may not be living the life you had planned, that shouldn’t stop you from living the life you were meant to.

Don’t let the loss of the life you had planned stand in the way of the life you were meant to live.

I felt like I was no longer giving things up, like I did that first year, but instead that I was being pulled in new directions, better directions. And I could follow those new paths by choosing the best attitude every day, by choosing to life with intention, by goal-setting again, by using my time wisely.

And I felt like I was almost getting a chance to start over. I could pursue my “best things,” as Crystal calls them in her book – the things I was most passionate about and most set me toward my goals and most fulfilled me.

As Brenna’s health care became less stressful, I did sit down and evaluate exactly what was most important to me and what I wanted to be involved in and what I actually felt like I had time to pursue again. Over the last two years, I’ve stepped back into some of my former roles, and I’ve chosen new ones, like becoming involved in FIRST.

I also have done a lot of praying. I have tried to really open my heart and listen to where God seems to be telling me to invest my time and my energy. To where I should be using my gifts and talents. And how to best care for and provide for my family right now.

In the first year, this blog (referring to blessedbybrenna.com) was very concentrated on one thing, the thing that was the focus of our lives at the time – Brenna. I was even encouraged by a lot of people to share more about other things in our lives, including about myself, but I just couldn’t. There wasn’t much to write about, because my life seemed to revolve around Brenna’s health.

But, gratefully, even though Brenna’s health is obviously a top priority for our family, our lives are now becoming much fuller with other passions and priorities that we have. I am no longer simply surviving, but I am living with intention and purpose again…and much more so than before Brenna’s birth. Though certain times still call for survival mode, I now know how to rise up again from surviving to thriving so that I am not continuing to live in the day-to-day.

And because of this, my writing and my blog have also evolved. I am pursuing more of “my best” and, as you probably have noticed, I am writing more about those things as they all relate to motherhood and the kind of person that I am striving to be…things like my personal goals, freezer cooking (a growing passion of mine and something that saves my sanity!), the books that I’m reading, the books the kids and I are reading, my emotions and feelings as a mother, some of my various writing projects, and my family.

All of these things – not just Brenna alone – influence my life and my role as a mother and wife…and these things are part of the new world of beauty and appreciation for difference that I have discovered because of Brenna’s arrival into our family.
My survival mode was a dark time….a time with a lot of tears and stress and mustering up all the energy that I possibly could just to parent Connor and Brenna every day.

I am proud to say that I now feel like I am living with purpose and intention just about every day. There are many areas I need vast improvement in, and purposeful living is always an exercise in discipline – it is something I work at every day.

But I’ve found that once you get into the habit of smiling, of choosing to see the good over the bad, it comes more easily in all areas of life. And it greatly impacts all other areas of life.

My life today looks much differently than when I envisioned marriage, children and my career as I was growing up. My planned life was much, much different than my real life is. But today, I’m realizing that this is the life that God had planned for me. When I was clinging to the things I felt like I was having to give up, God was leading me toward a different path, a path where I would be able to use the gifts and talents he gave me in a different way, as part of his plan. In each new season, I am striving to open my heart to where I believe God wants me to be and to go.

Now that I have stopped mourning the loss of the life I had planned,

I am discovering every day that the life I am meant to live is so much better.

Courtney has recently released her beautiful and inspirational book, That’s How You Know, available at www.blessedbybrenna.com. Like a warm hug from a very best friend, its uplifting messages and soft illustrations offer hope and inspiration on every page.

We often hear stories from young families who are given the diagnosis of ichthyosis, soon after the birth of their child. Many families are surprised, confused, and often scared. This week we received a story from the Taylor family, sharing not only how they coped with the initial news that their baby Brooklyn, now three months old, was born with lamellar ichthyosis, but how they are finding their strength in Brooklyn herself.
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Brooklyn Taylor was born as a collodion baby in October of 2013 at Fauquier Hospital in Warrenton, Virginia. We had no knowledge of this beforehand and our oldest child had no signs of ichthyosis, so seeing Brooklyn like that was very scary for us. She was full-term and appeared very healthy, but when they took her from my arms I thought the worst and prepared myself to hear that she wasn’t going to make it. Hours after she was born they transferred her to a more equipped hospital.

She spent nine long days in the NICU ward at University of Virginia in Charlottesville. Doctors came and went and we were told the worst, but we knew that our little caterpillar one day would become a beautiful butterfly. Her skin appeared as if she had been burned and it was so tight that it pulled her mouth and eyes open until they were flipping outwards. We were afraid that she wouldn’t be able to eat on her own due to the complications of her closing her mouth, but Brooklyn didn’t give up. With help from a wonderful lactation specialist she latched on, but later we realized it was less stressful to just bottle feed.

A doctor suggested that we go ahead and do a skin graphic surgery on her eyes to help them close. We begged him to wait until the hard shell came off so we could see if maybe it would fix itself. Weeks after coming home, the membrane fell off and within days Brooklyn was closing her eyes on her own. We went to a follow-up appointment with the doctor and when he saw her he could not believe his eyes.

Later that month we were told by her dermatologist that she had lamellar ichthyosis. We were overjoyed to finally have a name to put with the condition, but reading about lamellar was probably the hardest thing for us to do. Of course the pictures and information were very helpful, but they didn’t give us any hope. Later we saw that the hope we were looking for was right there in Brooklyn. From day one, she has showed us to never give up and that she doesn’t need to be healed, but accepted for who she is and how she is – beautiful inside and out.

Three months have passed and we are still learning about her condition and finding out what works for us. Bath time may be long and straining, but Brooklyn seems to enjoy it and she sure does remind us when its time for it. She is a very happy and demanding baby and every day is a challenge, but she loves having all the attention. Other than that, she is a normal child to us and should be treated as one by others. We are so proud of our beautiful little girl and because of her everyone can see what real beauty looks like.

It was truly amazing to see the response from our members and followers to the TinySuperheroes T-shirt promotion, created in honor of their one year anniversary, and also in honor of their very first cape recipient, FIRST member Brenna Westlake.

“In just five days 75 t-shirts have been ordered! In my mind, a total of 100 for the month was the original estimate,” said an excited Robyn Rosenberger, founder of TinySuperheroes. “Luckily the t-shirts are print-on-demand, so bring it on!”

If you are a fan of our Facebook page, you’ve already seen the uplifting phrase splashed across the front of the shirt, “Be Super in the Skin You’re In, Different is Beautiful.” It is as simple as it is powerful, and is striking the most resounding chord with our audience.

In fact, it seems this message has satisfied a craving; a desire for the opportunity to project one’s own voice, speak one’s mind, and be a part of something that is inspiring such a profound change in perception. It got us thinking how important it is for people to feel like they are not helpless; that they themselves possess the deepest potential for transformation.

And although it has only been a few days, we have already witnessed the transformation ourselves. As these individual voices of courage join forces, together, they are becoming as strong as the most powerful of choirs. Different is Beautiful.

Amidst a growing sea of scientific work focused on skin disorders in adults, there is only a limited amount focused on children. In 2012, a group of pediatric dermatologists founded PeDRA, the Pediatric Dermatology Research Alliance, in hopes to better treat and cure dermatologic diseases in infants, children and adolescents. Their mission is to foster collaborative clinical, translational, and basic science research. This past weekend, Executive Director Jean Pickford, attended the very first annual PeDRA (Pediatric Dermatology Research Alliance) conference, and is happy to report that there is “no stopping” this dedicated team of doctors, when it comes to finding a cure for ichthyosis. Today, she’d like to share her experience with those whom this remarkable new alliance will mostly affect; our members.

October 23, 2013

Some days in life are predictable. And then, there are the days that greet you with such utter amazement, no matter how you describe it, you will never do it justice. In fact, I happened to have just that type of day last weekend in Chicago at the PeDRA (Pediatric Dermatology Research Alliance) conference. So please allow me to do my best job at sharing the highlights from that meeting. As you read the words, I only hope you can feel even a twinge of the powerful energy I experienced.

Despite missing my early morning flight to Chicago due to another commuter’s rush-hour accident on the highway, I managed to still arrive at the 1st Annual PeDRA Conference, albeit late. The conference was attended by 80 pediatric dermatologists and six patient advocacy groups. The goal of this meeting was to gather the top leaders in pediatric dermatology research in one room to share, develop, and discuss new and innovative research to treat skin disorders. At the top of their list is, gratefully, ichthyosis.

Because of ichthyosis’ rarity, I have become accustomed to attending these types of meetings, and having other more prevalent skin disorders in the forefront. I am usually in the “back of the house” as ichthyosis is typically not a hot topic on the agenda. However, at this meeting, I happily climbed over the rows, and took my place in the front row, as ichthyosis was in fact, in the limelight. Investigators from around the country presented innovative ideas, current research projects, proposed grants, and novel approaches throughout the three-day conference. After each presentation, one thing became very clear – I knew that FIRST was part of something remarkable.

One of the biggest highlights throughout all these discussions was actually feeling the passion of these physician/scientists, as they presented and discussed their work. They are fueled by curiosity; relentless in their research efforts; and simply put – they get it. They understand how important it is to find better treatments and cures —and they really care. They also understand what an important role FIRST plays in their research. Because we have access to patients and a pulse on the most pressing areas of concern, we complement their work in an immeasurable way. It was clearly evident at this meeting that FIRST and the other patient advocacy groups were held in the highest regard.

So what was accomplished? Four major areas of focus were determined, with multiple physician/scientists signing on to various leadership roles. Those projects included:

• Neonatal Premature Skin – One group was organized to address the area of neonatal premature skin. This neonatal skin group will work together with neonatologists to develop and test scientifically based barrier formulations aimed both at improving barrier function and promoting its maturation.
• Observational Study - A second project was launched to begin a multicenter cooperative prospective observational study, enrolling infants who will receive a genetic diagnosis and be followed on a monthly basis. The goal is to help physicians to better understand who is at risk for complications and allow the development of protocols to better anticipate and manage these complications.
• NIH Rare Disease Clinical Research Consortia – A third project focused on a grant that will be submitted to the NIH Rare Diseases Clinical Research Consortia this year. The grant focuses on a multicenter collaborative network that will enroll patients with rare ichthyoses and perform coordinated longitudinal (over the course of time) and pilot (brand new) studies. It will also focus on defining clinical relevant biomarkers (changes found in skin or blood, such as in levels of a specific protein, that mark disease activity) and creating a basis for clinical trials leading to cures.
• Inflammatory Ichthyosis – The final project addresses inflammatory ichthyosis and its correlation to atopic dermatitis (eczema) and shared biomarkers that drive inflammation and itching.

PeDRA plans to meet as a full group each year, and I for one, will not miss a moment (and yes, I’m already planning to leave an extra hour early for the airport!). I am very impressed and excited to see how the work develops from this dedicated group of game-changers for ichthyosis. I am proud and privileged to be a part of their efforts.

You can look forward to hearing updates and information from FIRST regarding the progress of PeDRA and of these projects in the future.

Recently we posted a question on Facebook regarding the best solutions for putting lotion on an infant or toddler with ichthyosis, (so it doesn’t feel like a wrestling match!) The answers were so remarkably unique, we not only wanted to say thank you for your creativity, but we also wanted to share these helpful tips with the entire FIRST family – particularly those caring for a child with ichthyosis…

DVD player and an Elmo movie

IPad and we watch music videos on YouTube

I sang songs to my daughter. When she got older, we played name that tune. She is in 6th grade now and still asks to play name that tune when she is soaking in the tub.

Sing to them! Or let them run around while you chase them and apply their lotion… This gives you both a good workout.

Center yourself with deep breaths before and during applications. Be aware of your facial expressions and tone of voice and seek to impart calmness and empathy. If humor is at your finger tips, giggle with your child as she or he squirms. Use a soothing lullaby or music to accompany you. Give your toddler a plastic doll and lotion so they can play at being the one in charge. Give lots of time for open ended play.

Let them “help” with a little coconut oil so if it goes in their mouth it’s safe.

Try to turn it into a fun game.

Make up creaming songs with all the body parts.
“This is how we cream our tummy….”

Give them a toy to hold. Sing a song. Tickle in between rubbing.

My husband and I make it a game and have our 23 month old help us out. She’s gotten to the point where she will tell us where to put it on next.

If they aren’t light sleepers, while they slumber. Otherwise you need 2 people, one to hold them still, the other to apply. Singing was always a way to improve an arduous task.

"Love was a feeling completely bound up with color, like thousands of rainbows superimposed, one on top of the other.” -Paul Coehlo

Until yesterday, whenever I saw a rainbow, there was no question what came to mind…

…ruby slippers.

However, yesterday, while listening to Chris Wassel here at the office, as she shared her experience at the Dane’s Friends for FIRST Concert, in Cupertino, CA, the iconic image of Judy Garland, Toto in hand, singing with a voice that is arguably unmatched, was replaced.

“The concert was the kind of community support that truly takes your breath away…and it was so moving when Eric Phelps told the story of its symbol,” Chris said pointing to the cover of the concert program.

Moments later, I learned that rainbows are far more important than inspiring the wish of finding “somewhere over.” Yesterday, I found out that at the end of a long bike excursion, while healing from the loss of his son Dane, ( a 3 year old boy affected with severe ichthysosis) – Eric Phelps, came upon a rainbow. In his own words, here is Eric’s journey:

God’s Promises:

A few weeks after Dane passed, my friend encouraged me to ride the ‘The Tour of the California Alps’ in memory of Dane. With the support of my wife, Suzanne, and our boy/girl twins, Cade and Chandler, I spent hours each week training for the event, most of the time thinking only about Dane. In the afternoon of July, 11th, 2009, I climbed Carson Pass, the final mountain stage of the ride, again, thinking only about Dane. I was blessed to have my family waiting for me at the top of Carson Pass. We celebrated together; then a rainstorm came. I rode back down the East side of Carson Pass in heavy rain to where the ride began about 15 miles away. I again met up with my family, put my bike in the van, and we headed back towards Carson Pass on our way home. On the side of the road in a meadow below Carson Pass, we saw a rainbow. We stopped to take a picture but the only cameras we had were cheap flip phone cameras. Then, a French cyclist (still on his bike), stopped to take a picture. He miraculously was carrying an amazing camera in his cycling jersey. He spoke great English. I told him about Dane. I gave him my email address and asked if he could email me a picture of the rainbow. Sure enough, the following week, likely from somewhere in France, he emailed me this picture. If you look closely you can see a 2nd rainbow above and the color from the main rainbow goes right into the trees on both sides. Thank you to our anonymous photographer/friend.

Suzanne chose a rainbow as the logo for Dane’s Friends for FIRST. It is a symbol of God’s promises. In seeing this picture (shown above), I am reminded that our family will, in time, see Dane again.

And now, that rainbow has become a symbol of peace and hope for a community that reaches far beyond the region of Southern California. It is a community of friends, families, doctors, advocates, artists and all those who have embraced the message of young Dane: never lose hope for a cure.

It is with much love and gratitude that FIRST extends a warm thank you to all of the performers, attendees, doctors and volunteers at the FlintCenter in Cupertino for the unforgettable Dane’s Friends for FIRST Concert on September 7th. We continue to be inspired, each day, by the eternal hope and joy of young Dane and the strength of the entire Phelps Family, and are privileged to consider them a part of ours.

Ahhhh. Dreams…the mystical journey of slumber through a world that lives deep within. Have you ever wondered if dreams, perhaps, not only guide us under the moonlight, but can be equally effective in guiding us in the light of day? FIRST member Shelly Menzia believes just that. In fact, one of her most vivid and influential dreams occurred nearly 40 years ago, when she was just eleven years old; a dream that would whisper the very secret she had looked for most of her life. We are delighted to bring you Shelly’s story of acceptance, transformation…and yes…mermaids.

Do you have dreams that are so real they haunt you for the rest of your life?

There is one in particular that I remember when I was about eleven years old. I was out camping with my family near the Copper River in Alaska in an old beat up camper, on an even older powder blue pickup truck. In my dream a “merman” came to the camper to take me from my family. He was not like the beautiful mermaids or mermen from the movies or books. Although human-like in form, he had webbed feet and hands and huge “Spock-like” ears. He was tall with various shades of dark, seaweed green skin. Prince Charming…he was not. He told me I had to go with him and marry him under the sea. I was terribly upset that my family did not try to stop him. It was like they had been expecting it. My family shrugged their shoulders, looked at me sadly and waved good-bye as he pulled me away. I waved back crying and begging for him to let me stay with them. He quietly but firmly pulled me along.

When we entered the water, I was amazed that the water felt so warm and comfortable and that I could breathe. I had this amazing sense of freedom as we swam gracefully through the dark sea. In the distance from up above I could see the sun shining and sparkling down towards me and I was no longer afraid of the merman. After that I woke up but the dream has stayed with me for forty years.

It wasn’t until many years later I was able to analyze that dream with a friend and understood that it actually had some meaning to it. You see I was born with a rare congenital birth defect called ichthyosis (fish skin). It made growing up in our “soft skin is beautiful” society more difficult yet at the same time it shaped me into who I am. My skin is very dry with little elasticity, it has a “scaly” like appearance. The only place and time I am truly comfortable is when I am in the water. I spend hours in the tub and shower and put lotions on constantly so that I can feel as comfortable out of the water as I do in the water.

I have faced some discrimination with ichthyosis, not being allowed into a public pool; when I was a kid, having people being afraid to touch me for fear it was contagious, and having my blood be refused when I tried to donate it at a blood drive at college. These were just a few of the things that happened along the way. I think the worst and most devastating incident however, was having my supervising teacher during my student teaching assignment ask that I not work with her anymore. She felt my skin was too “distracting” for the students to learn. I was devastated and I came very close to giving up my career in special education. I wanted to lock myself away in a room away from other people because of her prejudice and inability to understand. Afterwards, I went home and had a good cry, (and consequently had the rest of my family crying) and went to take a long bath. (So long in fact my mother came to check on me…I think she had thought I had drowned myself or something.) I got through it though, and was placed with another woman who was a wonderful teacher and she was also very understanding. She knew what it was like to have a skin problem because she had skin cancer. She, along with my friends and family helped me get back on my feet emotionally and helped build up my confidence again. I ended up being much stronger for it and much less likely to place my beliefs about myself on the basis of one other person’s opinion. Especially someone I hardly knew.

Even though I was stronger however, my skin was still an issue with me. Oh, sure I could “handle” it OK and in 27 years of teaching I have never had a problem related to it. Still, my perception of myself was fairly low as far as physical attractiveness goes. I didn’t see myself as the person first, who happened to have ichthyosis. I was the girl with fish skin and somewhere inside of her – was me.

Then something strange happened. As I was talking about my skin condition to a new friend, I was joking, “Yeah, I’m part fish and part human…… Hey, I guess that makes me a mermaid!”

In uttering that one goofy sentence, I went straight from monster girl with fish skin to a beautiful mermaid swimming and frolicking under the sea. My perception of myself was changed radically and instantaneously from that moment on. You have heard of “black pride,” “deaf pride,” and “gay pride,” with me it has become “mermaid pride.” The many long baths I had to take, once tedious and boring, became trips to the sea in my imagination or I was like Daryl Hannah in the movie Splash. Just going in to wet my “fins.” It was a magical transformation.

The Legend of Mermaids

After that I started doing some research and became fascinated with the legends of mermaids. I learned that mermaid myths exist in almost every culture and they were thought by some to be healers or to have psychic powers. There have been very credible people who have sworn that they have seen mermaids, sometimes right before a storm as if they were being warned of impending danger. Many paintings show mermaids singing on top of rocks in the surf or playing with fellow sea creatures. Most of them are beautiful romantic images.

Then I started developing my own theory about where the legends of mermaids may have come from. What if just maybe, the legends of mermaids really did start with people who had ichthyosis? I had to have inherited it from ancestors up to ten generations back and it had to come from both sides of the family, (recessive genes); Irish from my dad’s side and English/Dutch from my mother’s, both cultures which have mermaid myths. Years ago people probably didn’t have lotions and baths to make them more comfortable so I imagine that everyone who had the chance would spend a lot of time in the water such as lakes, rivers, or oceans trying to stay comfortable. Perhaps folks saw ichthyosis people in the water and along with seeing their fish like skin, the legends of mermaids were “spawned.” (Ichthyosis although rare is found in most cultures just like the legends of mermaids.)

As I thought about it, I remembered going to an ichthyosis conference where for the first time I met other people with ichthyosis. I was amazed as I got to know people, of the common similarities we had besides our skin. We talked about some psychic experiences most of us have had and I found out that almost every single person was musically inclined. Many were involved in choirs.

So, of course, now I picture all OUR ancestors being the ones singing on those rocks and warning past sailors of danger. Since then I have acquired quite the mermaid collection. Of course, people who don’t know me have a hard time figuring out why I have all these mermaids- many which are bare chested all over the house. (I have thought about making them little bras so the more sensitive people won’t be offended.) My friends have been wonderful and always keep their eyes open for special mermaid “treasures” when they are traveling. My most recent addition came from Italy.

I have had some fun with my mermaid revelation. Once in the Galapagos Islands I was on a Zodiac boat with some of the male guides from the ship. They asked me about my skin but I didn’t think they would understand my English and I knew I wouldn’t be able to explain it in Spanish so I simply smiled at them and said very matter-of-factly, “Yo soy la sirena” (I’m a mermaid) and then I promptly dove into the water. When I looked back at them they had their mouths hanging open as they looked back and forth between me and each other. They couldn’t decide if I was crazy, joking, or maybe somehow telling the truth. They looked at me strangely throughout the rest of the trip. It was all I could do to keep from cracking up laughing every time they gave me one of those “looks.” By the end of the trip I had been invited by the guides to sing and play with their onboard music group they had formed. We had a blast. It was a fun and magical trip.

It was several years ago now that I sat discussing the strange dreams I’ve had with my friend Lydia. When I told her about my merman dream she pointed out quite easily what it probably meant. The merman WAS the ichthyosis and I WAS married to it. I didn’t like it, my family didn’t like it, but there was nothing any of us could do about it. It suddenly seemed so simple.

Now that I have been swimming through the “sea of life” for some time, I realize it’s OK to have ichthyosis and to be who I am. It’s not any scarier or worse than I choose to make it. Whenever I want to, I can swim up to that sun shining and sparkling down towards me from the surface to be who ever I want to be or do what ever I want to do, because that is where the magic lives. The only thing that can ever stop me from going anywhere or doing anything is my perception of myself and all I can say about that right now is……Mermaid Power!!!